Category Archives: Pre Surgery

Well, as the days tick by, I’m becoming more acutely aware of my forthcoming date with Dr. Holland. I’ve began to plan things a bit for those 2-3 weeks after the surgery when I’m certain not to be at my best.

getting a physical.

informing clients of my absence.

scaling down work schedule for the period.

scheduling time to have work done on my commuter bike (since I won’t be able to ride for 20-30 days.)

getting as many “heavy lifting” tasks done as I can before hand.

looking around for some clear glasses I can use to protect my eyes.

My KC eye has been awful at night lately… not so bad during the day. At night, it’s constantly dry – I am awakened 3-4+ times nightly, and pour lubricant into them. Sleep deprivation has caught up with me – I nearly fell asleep in a meeting, and the double espressos are not enough. I wonder how I’ll sleep after the surgery?

I’m having more migraine also – which may or may not be sourced to the KC vision/strain. Thank goodness for Imitrex. I just read the really amazing story about Serene Branson’s on-air voice problem during the Superbowl… it turns out it was migraine-aura related, not a stroke. I wonder if this will raise awareness of migraine and its debilitating effects.

Have been thinking about how the brain reacts to poor vision in one eye, and how it might re-learn to use that eye after surgery. Heard an interview on NPR about how our senses are mapped onto the brain. Quite interesting. I wonder how KC patients’ brains re-map themselves before and after cornea surgery?

Well, as of this morning, I’m 30 days away. In the next 2 weeks, I’ll be getting a full physical from my family doctor to be sure that there are no issues with the surgery (I don’t expect any.) I have began to notify my clients of a 2 week period of low productivity, and a full week out of the office.

I still feel overall excited, with a tinge of anxiety. I only question the idea of the transplant when I have a “good day” with my semiscleral lens, like yesterday (11 hours of wear time, very little discomfort.) But all I have to do is close my 20/20 right eye to see that I still have a problem. I am also hoping for the DALK not to be converted to a PK – but I need to be ready for that. The doctor said the DALK would be lifetime, with little chance of rejection, but it all depends on what he finds on the lower membranes.

Today, I have to go to the dentist – likely for a root canal. I’m a nighttime grinder, and I’ve damaged some of my teeth. I don’t want the teeth hurting or be on any conflicting pain medicines near the surgery, so getting it taken care of now. Not looking forward to it – I hate going to the dentist

Okay here are the keratoconus questions I brought with me to my second consultation along with the answers I received (aggregated from all answers, but mostly from Dr. Holland.) After the appointment I sat in the car and wrote down every answer I could remember. And here are the results:

Q: Have I tried all available contact lens ideas? [I have a semiscleral lens]A: Yes, I’d say you’ve reached the end of that option with the scleral lens. Most people never get to a scleral solution. You have advanced keratoconus, very steep cornea and very thin cornea… the lenses you have are the most comfortable that are possible. If this isn’t working, you’ve extinguished your options.

Q: Does my Scarring rule out most novel ideas? Is my scarring that bad?A: Yes, your scarring is centered and cannot be fixed. Most other things, such as cross-linking, corneal rings, etc. will not help. Also you have so much steepness that these options would not flatten your cornea enough no matter what the scarring. They can work for mild cases. If your right eye started showing KC, we might consider those approaches.

Q: What about Nerve Endings? Right now, my eye feels like it has a bad sunburn. What happens with your eye sensation after the graft?A: At first there will be none, but they will grow back in 3-4 months. Your “burning” pain is coming because your steepness prevents a good tear film from forming – you have dry eye all the time. The center of your cornea is drying out, and this is part of the problem.

Q: Corneal neovascularization – do I have it? Are there any pre-graft procedures I need to address it? Are the semi-sclarel lenses and their “blanching” causing this? [why I was concerned]A: No, you have only superficial case. No worries there. You have minimal vascularization. It becomes an issue when you have two or more quadrants of vascularization.

Q: What should I expect in terms of vision compared to what I have now? (bad)A: It’s hard to tell – some patients see better right away. Given the level of steepness and scarring you have, I think you’ll see better pretty soon. You may be able to try a contact lens or glasses prescription within 3 months. We may take sutures out bit by bit, but typically we wait until a year’s passed. After about a year, we may want to do a laser procedure to get rid of residual astigmatism.(postscript 3/17/11: My vision was immediately better – dramatically so…. see later posts for more detail.)

Q: I just keep reading about problems with cornea grafts on the web. Is it just that they are the only ones that post?A: Yeah.. but there’s another thing. The numbers are skewed by non-compliant patients. That is, 22-23 year olds that don’t follow the post-op regimen – drops, suture care, etc. You are old enough to know that this is important, and I expect you to do really well. With someone like you, we’re looking at a 97-98% success rate. Also, always better to ask us than read online.

Q: I am concerned about rejection – I read so many stories onlineA: Well, not with DALK. You have to almost try to get rejection with DALK for it to happen. You’ll see studies that show 5-7% rejection rate, but the numbers are affected by non-compliant patients. With a healthy eye, and a compliant patient, we’re looking at less than 3%.

Q: Could you tell me about graft lifetime with DALK and PK?A: With DALK, you should be good for life. If we perforate, and convert to PK, the lifespan can be 15-20 years. Your steepness and scarring mean the odds are probably 70-80% of us being able to successfully complete a DALK. (postscript 3/17/11: DALK successful – but barely – thanks to Dr. Holland’s skill, we did not convert to PK) As young as you are, you’d expect to have a second graft if we do PK. With a PK, 70% of the epithelial cells are lost in the first 5 years. With a DALK, you’ll lose around 10-11% of the cells in the first year, and then it stabilizes. The vision is the same with both. You would expect to have another PK at 60 years old or so – and the rejection rate would be higher.

Q: What’s going on with artificial corneas – by the time I’d need a second PK?A: The problems with these are pretty significant, especially considering the success of normal grafting. Then news keeps talking about them, but the success rate of donor corneas just makes it a no-brainer. They have way more glaucoma, way more infections, etc. The eligible cornea donors is so much greater than the current donation rate – and we use corneas up to age 75 in the USA (Australia even older.) For DALK, the age of the donor doesn’t really matter.

Q: Do you order your tissue “PK ready?”A: Yes, in every case. (he was impressed that I even know what this meant.)

Q: If I have a problem at home (1:15 hours away) would I rush up here or get with someone in Lexington?A: I know many of the guys down there, but most likely you’d just come in the next day.

Q: BIKING and surgery – I bike commute – will I be able to?A: You’ll want to give this a week or two, you’ll want to protect your eyes really well.

Q: What about post-op astigmatism?A: We always try to avoid it, but there will be astigmatism with a new cornea. It’s impossible to get the donor cornea perfectly positioned. For you, refractive surgery will be the likely best option to finalize that vision improvement.

Q: How many DALKs have you done? (dear reader, do not forget to ask this question.)A: We’ve been doing it routinely for around three years, and I do over 200 grafts per year – 60-70 are DALKs. (note: This is a LOT of DALKs)

I just finished my second informational meeting with Dr. Holland and must say it was excellent. I cannot begin to describe the differences in the staff between the Corneal Surgeons’ staffs between Lexington and the Northern KY team. They are more professional, friendlier, and more knowledgeable at every step of the way. I am not going to call out the Lexington surgeons by name here, I’ve no intent to stir things up, but if you’re in the area and needing Corneal work, you owe it to yourself to visit more than one.

Off to Edgewood.

After “working” half of a day in Lexington, I grabbed the GPS and an audiobook and made the 1:15 drive to Edgewood, KY (essentially a suburb of Cincinnati on the Kentucky side of the river.) After a yummy lunch at Panera and a few minutes checking email on my laptop, I went to the office. I saved their office as a “Favorite” on the GPS because I have a feeling I’ll be coming here a few times!

Checking in was the usual – insurance card, verifying contact information, etc. at the desk went quickly and I noticed that the waiting room was full of people. I also noticed that the average age of people there was well, well older than me – possibly by 25 years or more! I sat down to read my RSS feeds and noticed that they had a very strong public WIFI for us. Nice! I barely got the first one on the screen before they called my name . I felt mildly guilty, like you do in the “Fast Pass” line at Disney… until I realized that the other patients were there to see the cataract specialist, not the cornea doctor.

Feelings During the Visit

I realized as I walked to the back rooms that my anxiety about today had turned into a sort of strange excitement. Still concern, but I felt like I was doing the right thing and taking steps to make life better – not only for me, but for my family who has to deal with my grumpiness when my eyes are hurting. Dr. Holland’s reputation and the staff’s treatment bolstered this feeling.

Staff Knowledge about Keratoconus is Critical

I sat and spoke with a technician, who asked why I was there – did a basic vision test, including a pin-hole check. . I quickly established a great rapport with her and realized that she was not only smart about corneas, but it seemed more informed than the doctors I’d met about my condition earlier in Lexington. She knew a ton about the transplant – having sat in on many operations, including the DALK procedures. I was able to get a whole different perspective on the surgical process, etc. from her. She also wanted to do a topography – and I told her my cone was too steep for the equipment, but we did it anyway. Sure enough, the computer choked on my data as usual. I’ve not had a successful topography since 2003… the equipment just isn’t able to help after a certain point.

My eye pressure was checked and they dilated my eye to examine the retina and optic nerve. Doing it only in my left eye made me look kinda cyborg-like, and my daughter got a kick out of it. All was golden – my eye is very healthy. Except for that damn cornea.

Find a Great Cornea Specialist… even if you have to drive or fly there! Go to someone who does 50 or more grafts annually, preferably a mix of DALK and PK who has surrounded themselves with knowledgeable technicians and staff. Your eyes are your window on the world – this is not the time to compromise.

I also ended up talking to a good, retina-surgeon friend on my front porch last year – and she made quite an impression with her recommendations… “don’t compromise when it comes to cornea surgery, period.” So I’ve learned a lot.

Bottom Line

If you have Keratoconus, and feel that the Doctor is treating you like the rest of his patients or that the technicians don’t understand the disease due to the “rarity” you owe it to yourself to find another expert, even if you have to drive or fly

Planning to head up for my second consultation with Dr. Holland tomorrow. I’m looking for answers to a few more questions, and a bit of reassurance I think.

It’s normal to have ups and downs when considering this procedure. And it’s normal to experience a whole spectrum of emotions – from sadness, worry and even excitement.

For a while, I felt silly for feeling nervous about the whole corneal transplant thing. I mean.. it’s an “outpatient” procedure. But, for most, it’s unlike any other thing that’s happened in one’s life. Yes… a knife, on your eye. At first that sounds scary as hell. But we all must remember that corneal surgeons use a microscope, precision tools and years of practice. To you, it’s one of the biggest things that has ever happened (especially for younger patients,) but to the physician, it’s rather routine.

I think most cornea doctors realize that this is very important, and my experience has been that they are more than willing to talk with you in depth about it, as many times as you want. If your doctor seems rushed or doesn’t answer your questions – by all means find another.